When people speak of someone struggling with anything neurological they often say that she is losing her mind. As if her mind is like her keys and can be found behind the half empty Target bag from her last outing.

I am not losing my mind. It’s still there. Most days? Most days, I look the same as always.

Dusty Post-it Notes

Instead, I am losing tiny bits like post-it notes whose glue has worn off and the once vibrant square has slid behind some dusty credenza. I search for a word that should be there, a word I know, a word I know I know and it eludes me. 

Years ago, I read a book by Stephen King. I read many by him then. These were in the days before children or even cell phones. Any free moment was spent consuming books like my now teen son consumes Dr. Pepper and Goldfish. My rides on MUNI and BART were never boring nor were the long waits between film starts as an usher.

As I remember, this book had a character whose brain was like a giant library filled with file cabinets. For years, he happily accumulated information and neatly filed it away for retrieval. Even as I recount this tale, I struggle with the words needed to share the clear vision that still remains in my head.

At a certain point in his life, the file cabinets begin to fill and he must make choices as to what remains on those cabinets. He has to remove certain childhood stories to make space for advanced trigonometry or the like. When a choice is made, he carries that file to a… here I am honestly stopped by the word. I could roll to another tab and Google it and pretend it isn’t happening but that seemed odd in the face of this writing.

A Borrowed Word

Incinerator. I never could think of it on my own, but hubby helped. The library had an incinerator at the top with a circular ramp that wrapped around allowing him to push a file box up just as any Office Manager would. My apologies to Mr. King if I have butchered his book. Please remember, I have lost a lot of files by now.

The image of these files and some smaller version of me picking out what I no longer needed to make space for new knowledge struck me so deeply. I hoped I would choose wisely. And why did I forever remember the awkward dance at Performing Arts Camp when I was 13? My hair had gone Sun-In orange and I made a bad joke in front of a very cute older guy. Seems like that would be so worthy of burning. I am also pretty sure there are really great things worthy of remembering, if only I could remember.

Missing Files

At the beginning of the changes, I just thought that the files were in the wrong cabinet. Being a mom of two neurodiverse children, I am pretty familiar with this feeling and it didn’t scare me. Nothing that a good night sleep wouldn’t fix. Of course, at this point I am not sure I’d know a good night sleep if it punched me in the face, which is probably the only way I am getting that sleep, by the way.

Then, I described it as having all my files but some prankster had removed the labels. Given enough time I could find what I needed but the frayed edges were starting to show. I would say “what’s the word I’m looking for?” with family yet could usually still cover up with others by slowing my words and finding synonyms quickly. The frustration was building as I inwardly, and sometimes outwardly chided myself for losing such an obvious name or word.

SOOOOO Many Files

The files were then poured out, scattered across the vast floor. I would run from folder to folder now frantically, finding that word or scrap of thought. “It’s still here. I know it’s still here!”

But now. Now... Now, I fear they have made their way to that incinerator. Why? They don’t really know. Just like they don’t know why my feet go numb and my legs go weak and when I stand the world can go dark. And why my body often rejects food and embraces pain.

This Wasn’t Part of the Deal

I accepted the body. Whatever unknown that has wrapped itself around my system and spread like a winding ivy,not unlike the dark forces in many of that favorite author’s books, I have made an uneven peace. No white flag but an appreciation of its vitality and power. I would compare to the Greek mythological monster who would grow three heads for each cut. I would but my writing teachers always cautioned me to chill a bit on the analogies and well, let’s be honest, that name has long since been burned, the ashes cooled, and shoveled up.

This is my brain. I did not cede my brain. I did not accept my smaller self randomly throwing files into that incinerator because I love words. Sure, my body matters and I am working to keep it. But words, glorious words.

Words are my Memes

My vernacular is filled with references to other sources: plays, films, books, heck Saturday Night Live! Remember when TV was a meme before memes. When you would go back to school or work and quote Martin Short or Billy Crystal or Mike Myers. Phrases like “I hate it when that happens” “Could it be … Satan?” and “Party on” became its own language. I still speak this language. At least for now.

But it doesn’t stop there. Shakespeare, oh Shakespeare! The ingenue long since in my rear view, I still check in on the monologues memorized in my acting school days. Maybe I should try to learn something more age appropriate but I think I am a little afraid that it will set so many more files ablaze.

Tennessee Williams. Lanford Wilson. Theresa Rhebeck. Edward Albee. This list would be so much longer but, and I would say this in all caps but you would probably stop reading, I can’t remember! I know there are so many more. Some will come as soon as I stand in the shower after hitting publish and some will not come without me heading back to the always open Google tab.

I think that if I knew what was setting those files ablaze, it would be better. But this constant question of whether the next day will bring stasis or decline, or if it will be broken by just enough relief for hope is another blow to an already weary system. 

Always Hope

Hope -- the eternal light at the end of the tunnel. Another standing character in all those favorite plays and novels. Sometimes as a cruel teaser leading the naive protagonist toward their inevitable demise but more often, and hopefully (yes… hopefully) leading them to ultimate triumph.

Here’s to hope. 

I’m losing my words, my files, maybe even my mind, but I am holding tight onto hope. Because if it goes into the fire, I am, too.